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Wednesday, August 23, 2017

Antivax Craziness in Minnesota

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Lena H. Sun in The Washington Post:
Minnesota’s worst measles outbreak in decades has un­expectedly energized anti-vaccine forces, who have stepped up their work in recent months to challenge efforts by public health officials and clinicians to prevent the spread of the highly infectious disease.
In Facebook group discussions, local activists have asked about holding “measles parties” to expose unvaccinated children to others infected with the virus so they can contract the disease and acquire immunity. Health officials say they are aware of the message posts but haven’t seen evidence that such parties are taking place.
The activists also are using social media to urge families who do not want to immunize their children or who believe their children have been harmed by vaccines to meet in Minneapolis this week with associates of Andrew Wakefield, the founder of the modern anti-vaccine movement. The associates have been touring the United States and abroad with the former doctor’s movie, “Vaxxed: From Cover-up to Catastrophe,” which repeats the debunked theory that vaccines cause autism and that scientists, pediatricians and the public health system are part of an elaborate conspiracy. A recent fundraiser at the clinic of a suburban Minneapolis pediatrician who supports “alternative vaccine schedules” benefited a second film that also will feature Wakefield, whose research has been retracted for falsehoods.

Tuesday, August 22, 2017

Trump Stiffs RFK, Jr.

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Trump promoted that idea, but stiffed antivax activists in his appointments to FDA and CDC.

Helen Branswell at STAT:
Robert Kennedy Jr., the environmental activist and leading vaccine skeptic, says that it has been months since he has talked with White House officials about chairing a vaccine safety commission — and that the idea of such a panel may no longer be under consideration.
“I’ve had no discussions specifically about the vaccine safety commission, probably since February,” Kennedy told STAT. “You’d have to ask the White House. It may be that it’s evolved.”
Kennedy said, however, he has met with a series of top administration officials about vaccine safety since Trump took office, including officials at the upper ranks of the Food and Drug Administration and National Institutes of Health. He said those meetings took place at the request of the White House.

Monday, August 21, 2017

Autism: The Number of Stakeholders Will Grow

In The Politics of Autism, I write:
The number of people with a stake in the issue is going to mount. I am not saying that there will be a true increase in the prevalence of autism. As we saw in chapter 3, it is unclear how much of the apparent change involves awareness and diagnostic standards. Even if there has been a true increase in recent decades, there is no way of knowing whether it will go on. But the rise in the number of autism diagnoses and educational determinations will translate into a growing population of people who have lived with the autism label, and who think of themselves as autistic. Most in this category will have family members and other people who are close to them. They may be guardians or caregivers, or they may just be friends and relatives with a deep concern. Either way, autism will be part of their lives, too. Overall, the share of Americans who know someone with autism will surely top the 39 percent recorded in 2008. One study found that 60 percent of respondents in Northern Ireland knew someone with autism in their own family, circle of friends or co-workers. There is no reason to think that the figure would be lower in the United States.

Sunday, August 20, 2017

Autism and Alphabet Soup

In The Politics of Autism, I write:
For children under three, the first stop is an Individualized Family Service Plan (IFSP), which maps out Early Intervention (EI). After age three, children get an Individualized Education Program (IEP) from their local education agency (LEA), that is, their school system. The IEP explains how children will receive a free appropriate public education (FAPE) in the least restrictive environment (LRE) The program may include speech therapy (ST), occupational therapy (OT), physical therapy (PT), adapted physical education (APE), and applied behavior analysis (ABA) interventions including discrete trial training (DTT). Depending on which state they live in, official agencies or insurance companies may also subsidize services from NPAs (nonpublic agencies). As attorney Gary S. Mayerson observes drily: “Given the confusion that all these unhelpful acronyms are causing for parents and professionals, it is not without irony that autism is associated with communication dysfunction.”

Saturday, August 19, 2017

Why Autism Is Political

In The Politics of Autism, I write:
Autism is political. It involves all kinds of government policy – from provision of education and social services, to regulation of insurance companies and medical professionals, to public funding of scientific research into its causes and treatment. The connections between government and autism reach farther than most people know. For example, many police officers and other first responders get training in how to deal with autistic people, who might react in unexpected ways during emergencies and crime investigations. Many organizations lobby policymakers and try to influence what government does about issues involving autism. Thomas Insel, director of the National Institute of Mental Health (NIMH), told journalist Andrew Solomon: “We get more calls from the White House about autism than about everything else combined.”

Autism is “political” in a broader sense. Political conflict involves ideas and arguments for which the information is often murky, incomplete, interpretive, and open to manipulation. Just about everything concerning autism is subject to dispute. What is it? What causes it? How many different kinds of it are there? Who has it? What can we do about it? Is it even the right problem to be thinking about? All of these questions, and many others, are the stuff of bitter political battles. The stakes are high: according to one estimate, the national cost of supporting people with autism adds up to $236 billion per year. Of course, such numbers themselves entail controversy. An alternative perspective is that they do not represent the cost of autism, but rather the cost of discrimination against people who have it, and the failure to help them lead independent lives.

Friday, August 18, 2017

Autism and the Justice System

According to the Centers for Disease Control and Prevention, one out of 68 — or roughly 1.2 million — people under the age of 21 in the U.S. is diagnosed with autism. While there are no reliable figures of how many autistic people are incarcerated, a 2015 report by the Department of Justice's Bureau of Justice Statistics found that 2 in 10 prisoners and 3 in 10 jail inmates reported having a cognitive disability. With more than 2.3 million people imprisoned in the U.S., it's fair to conclude that thousands of diagnosed and undiagnosed autistic people are behind bars with little to no support.
As a prison volunteer, I've seen countless inmates over the years who were clearly developmentally disabled and yet stuck in a revolving door of incarceration. One inmate in particular named Manny sticks out in my mind. He was a large man, over six feet tall with large arm muscles and knuckles that bore the scars of many past fights.
It was my first time in a prison as a volunteer and I was nervous. Manny entered the cafeteria and immediately began waving at all of the corrections officers and inmates as they passed. A few patted him on the back and I could see him stiffen for a moment each time, his smile faltering, before he saw another familiar face and the smile returned.
He noticed me and came over to say hello. He avoided eye contact, preferring to look at my shoulder. But he was curious as to who I was and eager to introduce himself. I reached out my hand but his smile faltered so I waved instead. That brought the smile back. He turned away and went to sit near the wall.

"Manny is very sweet, until he gets mad," the female officer standing nearby told me. "He goes crazy when he gets into a rage. Things just set him off. He's like a kid in many ways."
Another officer later told me that many correctional officers suspected he may be autistic, but without an official diagnosis, his violent outbursts led to more charges and stints in solitary because no one really understood how to handle him. That lack of understanding is a huge problem within the U.S. justice system today

Thursday, August 17, 2017

Charlotte Fien

This happened a few months ago, but in light of recent events in Charlottesville, it is timely.

Charlotte Helene Fien, 21, has Down Syndrome and autism. She sent her speech to the British House of Lords, from where it was forwarded to the United Nations Human Rights Committee at the United Nations, Geneva. where she delivered it in person on March 20.

The text:
Good afternoon my name is Charlotte Helene Fien.
I am 21 years old and have Down's syndrome and Autism.
In the 1930's and 1940's the Nazis decided to get rid of all disabled people.
More than 200,000 disabled people were murdered including many children with Down's syndrome.
Today, the same thing is happening.
A test that checks for Down's syndrome is being used to kill all babies with Down's syndrome.
In Iceland, Denmark and China not a single baby with Downs Syndrome has been born for 7 years, SEVEN YEARS!
The goal is to eradicate Down's syndrome in future.
This makes me angry and very sad.
I have Down's syndrome.
I am not suffering.
I am not ill.
None of my friends who have Down's syndrome are suffering either.
We all live happy lives.
We go out to the pub,
have dinner parties at my friend Aimee's house,
have boyfriends and
have plans and goals for the future!
We just have an extra chromosome we are still human beings.
We are human beings.
We are not monsters
don't be afraid of us.
We are people with different abilities and strengths.
Don't feel sorry for me,
my life is great!
My goals are to find a job I love.
I love golf and would like to teach children to play.
I've been playing golf since I was 6 years old.
I want to live independently one day and support myself with my job.
I already travel on my own to different places even abroad.
Don't be afraid of me or feel sorry for me.
I'm just like you
I'm just like you but different.
I have an extra chromosome
it's not stopping me from enjoying my life.
Please do not try to kill us all off.
Do not allow this test.
If you do allow it you are no better than the Nazis
who killed 200,000 disabled people.
I have a right to live
and so do other people
like me"
YouTube link to hear her speak -

Wednesday, August 16, 2017

Abortion and Iceland

In The Politics of Autism, I explain:
When a pregnancy is under way, doctors can detect certain kinds of disorders, but neither amniocentesis nor any other prenatal test can currently tell us whether a fetus will become autistic. Suppose that such a test did exist. “The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80 percent likelihood of autism and so once the baby's born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioral approach,” says leading autism scientist Simon Baron-Cohen. But would the “best case use” be the most common? When amniocentesis indicates Down Syndrome, most mothers choose abortion. A study of autism parents in Taiwan found that just over half would abort if a prenatal test indicated that their next child would be autistic. We cannot be sure what the figures would be if such tests were available in the United States, but it seems likely that a large share of autism pregnancies would end in abortion.
At CBS, Julian Quinones and Arijeta Lajka report a dramatic drop in Down Syndrome births in Iceland.
Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women -- close to 100 percent -- who received a positive test for Down syndrome terminated their pregnancy.
While the tests are optional, the government states that all expectant mothers must be informed about availability of screening tests, which reveal the likelihood of a child being born with Down syndrome. Around 80 to 85 percent of pregnant women choose to take the prenatal screening test, according to Landspitali University Hospital in Reykjavik.
Using an ultrasound, blood test and the mother's age, the test, called the Combination Test, determines whether the fetus will have a chromosome abnormality, the most common of which results in Down syndrome. Children born with this genetic disorder have distinctive facial issues and a range of developmental issues. Many people born with Down syndrome can live full, healthy lives, with an average lifespan of around 60 years.
Other countries aren't lagging too far behind in Down syndrome termination rates. According to the most recent data available, the United States has an estimated termination rate for Down syndrome of 67 percent (1995-2011); in France it's 77 percent (2015); and Denmark, 98 percent (2015). The law in Iceland permits abortion after 16 weeks if the fetus has a deformity -- and Down syndrome is included in this category.
The story quotes a pregnancy counselor:
"We don't look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication... preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder -- that's so black and white. Life isn't black and white. Life is grey."

Tuesday, August 15, 2017

Damore and Self-Diagnosis

In The Politics of Autism, I discuss evaluation and diagnosis.  Prominent people sometimes publicly engage in casual self-diagnosis.  Jerry Seinfeld did so three years ago, and got a great deal of negative reaction, causing him to walk back his remarks.  

At The Daily Caller: Eric Lieberman reports on  James Damore, the Google engineer who lost his job after questioning diversity policies.  On a Reddit "“ask me anything” (AMA) session, he speculated that he might be on the spectrum.
“Hello James. I have been diagnosed with Autism Spectrum Disorder and I recognised a lot of myself in your interviews,” Reddit user “TheKingsRaven” said. “I was curious if you’ve ever been diagnosed with ASD/Autism/Aspbergers [sic]yourself? Sorry if this is too personal.”
Damore appeared to have no qualms with the question, answering in a straightforward, apparently honest way.

“I am likely on the spectrum,” Damore said, “because my thinking is very pattern oriented and I didn’t start talking until much later than normal.”
Another Redditer then asked if people with ASD innately have problems with leadership, drive for success, or ideas in general.
“I’m not sure, I haven’t read enough [on] autism and those on the spectrum can be very different than the most extreme,” Damore responded. “I personally have problems with leadership and don’t have as high a drive for success as others.”

Monday, August 14, 2017

The Vax War Goes On

At Vaccine, Mark Dredze and colleagues have an article titled "Vaccine Opponents’ Use of Twitter during the 2016 US Presidential Election: Implications for Practice and Policy."
These patterns show that those endorsing vaccine refusal are significantly more engaged with Mr. Trump than with other candidates. This engagement increased after the election. Given the increased energy of the vaccine refusal community, and early actions from the Trump administration, we may see policy proposals (including increased pressure on state governments from both federal and grassroots sources) aimed at addressing  erceived vaccine safety concerns. Even small changes can have consequences, since prevention of communicable diseases that impact children requires long-term, consistent effort.
At PLOS One,  Sara Pluviano, Caroline Watt, and Sergio Della Sala have an article titled Misinformation Lingers in Memory: Failure of Three Pro-vaccination Strategies."  The abstract:
People’s inability to update their memories in light of corrective information may have important public health consequences, as in the case of vaccination choice. In the present study, we compare three potentially effective strategies in vaccine promotion: one contrasting myths vs. facts, one employing fact and icon boxes, and one showing images of non-vaccinated sick children. Beliefs in the autism/vaccines link and in vaccines side effects, along with intention to vaccinate a future child, were evaluated both immediately after the correction intervention and after a 7-day delay to reveal possible backfire effects. Results show that existing strategies to correct vaccine misinformation are ineffective and often backfire, resulting in the unintended opposite effect, reinforcing ill-founded beliefs about vaccination and reducing intentions to vaccinate. The implications for research on vaccines misinformation and recommendations for progress are discussed.
From the article:
Our pattern of results thus confirms that there should be more testing of public health campaign messages. This is especially true because corrective strategies may appear effective immediately yet backfire even after a short delay, when the message they tried to convey gradually fades from memory, allowing common misconceptions to be more easily remembered and identified as true [25]. This is the case of one of the most frequently used corrective strategy employing the myths versus facts format, which often backfires because the simple repetition of the myth, though well-intended and necessary in order to contrast it with the available evidence, paradoxically amplifies the familiarity of that false claim making it seem even more believable and widely-shared [46]. This happens, at least partly, because people tend to mistake repetition for truth, a phenomenon known as the “illusory truth” effect [22, 23]. Familiarity appears as a key determinant of this effect; indeed, when something seems familiar is easier to process and one is more inclined to believe it [24], regardless of whether the statement is factually true or false [22, 47] or was initially rated as credible or questionable [48].
 Soumya Karlamangla and Sandra Poindexter report at The Los Angeles Times:
Even with a new law that has boosted kindergarten vaccination rates to record highs, hundreds of schools across California still have so many children lacking full immunization that they pose an increased risk of disease outbreaks, according to a Times analysis of state data.
At nearly 750 schools, 90% or fewer kindergartners had been fully vaccinated last year, the analysis found. Experts say the rate should be at least 95% to prevent the spread of highly contagious diseases such as measles.
California’s tougher inoculation law, known as SB 277, was approved in 2015 after a measles outbreak that originated at Disneyland. The law bars parents from citing religious or personal beliefs to excuse their children from immunizations, but some who already had such exemptions were allowed to keep them.
The rest of the unvaccinated children need a form signed by their doctor saying they had a medical reason not to get their shots.
In the school year that began last fall, the law’s first year, the number of kindergartners in California with medical exemptions tripled, the analysis found [from 991 to 2850]

Sunday, August 13, 2017

Autism and Moral Responsibility

In The Politics of Autism, I discuss interactions between police and autistic people.  When autistic people violate the law, to what extent should the courts hold them responsible?  The answer is the same as for NT people:  it depends on the individual case.

As a neurodevelopmental condition that affects cognitive functioning, autism has been used as a test case for theories of moral responsibility. Most of the relevant literature focuses on autism’s impact on theory of mind and empathy. Here I examine aspects of autism related to executive function. I apply an account of how we might fail to be reasons responsive to argue that autism can increase the frequency of excuses for transgressive behavior, but will rarely make anyone completely exempt from moral responsibility in general. On this account, although excuses may apply more often to autists than to others, the excuses that apply to autists are just the same excuses that can apply to anyone.

Saturday, August 12, 2017

Autistic Adults' Quality of Life

In The Politics of Autism, I write:
Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.
At Autism, Michael Ayres and colleagues have an article titled "A Systematic Review of Quality of Life of Adults on the Autism Spectrum."  The abstract:
Autism spectrum disorder is associated with co-existing conditions that may adversely affect an individual’s quality of life. No systematic review of quality of life of adults on the autism spectrum has been conducted. Our objectives were as follows: (1) review the evidence about quality of life for adults on the autism spectrum; (2) critically appraise current practice in assessing quality of life of adults on the autism spectrum. We searched bibliographic databases and other literature to identify studies using a direct measure of quality of life of adults on the autism spectrum. Hand searching of reference lists, citation searching and personal communication with field experts were also undertaken. In total, 827 studies were identified; 14 were included. Only one quality of life measure designed for use with the general autism spectrum population was identified. Quality of life of adults on the autism spectrum is lower than that of typically developing adults, when measured with tools designed for the general population. There are no comprehensive autism spectrum disorder–specific quality of life measurement tools validated for use with representative samples of adults on the autism spectrum. There is a pressing need to develop robust measures of quality of life of autistic adults.
The perspective of autistic people on these issues can be quite different from that of non-autistic people. From the article:
[We] need to also be mindful that autistic individuals may value some experiences and activities more/less than people without ASD (Tavernor et al., 2013). For example, time spent on repetitive behaviours and on circumscribed or particular interests may be considered   more desirable than some activities undertaken by typically developing adults; social and group activities may be valued less by autistic adults. Therefore, the items included in these specific domains of assessment tools developed for and validated with the general population may lack validity when used with autistic individuals.

Friday, August 11, 2017

Better Business Bureau v. DeVos Company

In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.
As previous posts noted, Education Secretary Betsy DeVos has a stake in Neurocore, a "brain training" company. U

At International Business Times, Josh Keefe reports that DeVos actually increased her stake in the "brain training" outfit called Neurocore and that the BBB is going after it.
The National Advertising Division (NAD) of the Council of Better Business Bureaus recommended this week that Neurocore “discontinue its testimonials.” The NAD said a review of the company’s claims, and their supporting evidence, led it to conclude that “the advertiser’s evidence was insufficiently reliable to substantiate the strong health-related advertising claims.”
According to the NAD, these claims include statements such as, “81% of children who come to us on ADHD meds and complete our program are able to reduce or eliminate their use of medications upon program completion,” as well as claims that Neurocore services produced a “25% reduction in reported symptoms on the autism evaluation checklists.”
The problem with the company’s claims, according to the NAD, is that they relied on a study of their own patients and those patients’ self-assessments.
Advocates for students with disabilities including autism were especially alarmed by DeVos’ connection to Neurocore — a company that claimed its treatments produced a “25% reduction in reported symptoms on the autism evaluation checklists.”
“We have a lot of evidence-based treatments that actually do help children with autism,” Fred Volkmar, director of the Yale Child Study Center, told Spectrum News, a news site dedicated to autism research, in February. Volkmar said that DeVos’ awareness of treatments seemed to be limited to the one that “has not yet been shown to be effective.”

Thursday, August 10, 2017

Low Reiumbursement Rates in South Carolina

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities, as well as other government programs at the federal and state levels.

Tim Smith reports at The Greenville News:
A "large" number of South Carolina children suffering from autism are not getting access to medically necessary treatment they need because the state pays the lowest therapy rates in the nation, a lawyer representing advocates and organizations has told federal Medicaid officials.
In a letter to the U.S. Centers for Medicare and Medicaid dated June 29, the advocates urge federal officials to direct the state Department of Health and Human Services to increase their reimbursement rates for applied behavior analysis treatments, what advocates believe offers the most hope for many who suffer from autism.
"Our most immediate concern is that a large number of South Carolina children are being deprived of access to prescribed, medically necessary ABA treatment because SCDHHS’ substandard reimbursement rate for these services — the lowest in the country, by far — has resulted in a lack of providers of this desperately needed care," Daniel Unumb wrote for the Autism Legal Resource Center and seven advocates and their organizations.

Unumb is the husband of Lorri Unumb, vice president of Autism Speaks and a new appointee for the state Department of Disabilities and Special Needs Commission. She also signed the letter.

Invitation to Take Part in an Autism Study


My name is Katie Franke, and I am a doctoral candidate in school psychology at the University of South Carolina. If you are a caregiver of a teen with ASD (ages 13-18), I invite you and your teen to participate in an on-line research study of strengths and well-being. The online questionnaire (password: research) takes 20-30 minutes total to complete. A caregiver completes the first part, and the teen completes the second part. Participants can enter to win one of eight $25 gift cards!

Survey Link:
Password: research
Kathleen B. Franke, M.A.
School Psychology Doctoral Candidate
University of South Carolina
1512 Pendleton Street
Columbia, SC 29208 

Wednesday, August 9, 2017

Evidence for the Cost-Effectiveness of Early Intervention

A release from the University of Pennsylvania School of Medicine:
A recent study by Penn Medicine researchers published online ahead of print in the Journal of the American Academy of Child & Adolescent Psychiatry found that the costs associated with the Early Start Denver Model (ESDM), one evidence-based treatment for young children with autism, were fully offset after only two years following intervention due to reductions in children's use of other services.
The Early Start Denver Model (ESDM) is designed for children with autism ages 12 to 48 months. The program includes a developmental curriculum and a set of teaching procedures that are delivered by therapy teams and parents either in a clinic or the child's home. A randomized trial of 48 children between 18 and 30 months of age who were diagnosed with ASD found that children who received ESDM had better cognitive and behavioral outcomes than children who received community treatment. The present study of associated costs used data that was collected during that trial and for two years after the trial was completed.
During the intervention, children who received the ESDM had average annual health-related costs that were higher by about $14,000 than those of children who received community-based treatment, although this difference was not statistically significant.
The higher cost of ESDM was partially offset during the intervention period because children in the ESDM group used fewer community services like early intervention and speech therapy. In the post-intervention period, compared with children who had not received ESDM, children in the ESDM group used fewer early intervention services, less occupational or physical therapy, and less speech therapy, resulting in cost savings of about $19,000 per year per child. While the exact reasons for this reduction in service use aren't known, it is likely that children who were in the ESDM group used fewer services because they had made developmental gains to the point that their parents thought that they no longer needed those services.
Zuleyha Cidav, PhD, the lead author of the study, and a research assistant professor at the Center for Mental Health Policy and Services Research says that the findings demonstrate the economic value of identifying young children with autism and providing early high-quality, intensive and comprehensive developmental behavioral treatment.
"Prior studies have found that community-based early intervention costs between $40,000 and $80,000 per year," Cidav said. "We found that the high-quality, university-based early intervention delivered in this study costs about $45,580. This suggests that the issue is not how much we spend on early intervention, but rather how we use that money most effectively to scale up such interventions so that they are effective in community settings."

According to the study's senior author, David Mandell, ScD, a professor of Psychiatry and director of the Center for Mental Health Policy and Services Research, prior studies that relied on simulated data to estimate the return on investment of early intervention generally found that it would take decades to see a financial return on investment.

"We wanted to show what the short term payoff would be if payers invested in early intensive treatment for children with autism," Mandell said. "Much to our surprise, we found that the entire additional cost associated with high-quality intervention as opposed to traditional community services, which often are not as intensive or as of high quality, was completely offset within two years."
In the United States, the two largest funders of early intervention services for children with autism are the Department of Education and Medicaid. In Pennsylvania alone, Medicaid pays roughly $130 million each year for special education services like behavioral health therapists and occupational and physical therapy in schools. Mandell says his team's study is particularly important in the current political climate, where cuts to funding for Medicaid and special education are regularly being debated by elected officials.

Tuesday, August 8, 2017

The Benefits of Portraying Autism on the Screen

In The Politics of Autism, I discuss depictions of ASD in popular culture.  

Matthew Berger writes at Healthline:
One in 68 U.S. children has autism — 1 in 42 boys — and that rate has steadily increased since researchers began tracking it in 2000.
But just 58 percent of people with autism were employed in 2015. That’s far lower than the overall employment rate, and also the overall rate for people with disabilities.
More people with autism in films and on TV — portrayed accurately — help fix that.
“There’s an unemployment rate that’s ridiculously high,” Matt Asner, vice president of development at the Autism Society of America, told Healthline.
He said people with autism are “model employees,” and that employers need to step up and hire them.
“But in order for that to happen, we need to educate employers on what autism is, and I think film and TV does a great job at that,” he said.
Asner mentioned the new series Atypical and The Good Doctor
“The greatest thing that’s happening right now…is that we’re starting to see people talk about autism in a very respectful way. We’re seeing people weave it into the lives of the people on-screen instead of making a statement about it,” Asner said. “They’re dealing with autism the way it should be dealt with, just as a part of life."

Monday, August 7, 2017

The Good Doctor and Atypical

In The Politics of Autism, I discuss depictions of ASD in popular culture.  

At Deadline, Antonia Blyth reports on a new ABC series about an autistic surgeon
The Good Doctor has some parallels with the show House, EP David Shore admitted. “There was speculation as we went along about Dr. House and we certainly didn’t shy away from that,” he said. “The characters though ultimately couldn’t be more different.”

Shore was quick to point out that much research and consultation was done before representing a person living with autism. “We saw a lot of doctors, we consulted with people, we’ve got people on the spectrum who we’re working with,” he said. “But he is a specific character, he’s not there to represent autism, he’s there to represent Dr. Shaun Murphy.” 
Dr. Murphy exhibits savant traits, which are a highly unusual aspect of autism, but Shore assured reporters the show would work hard not to contribute to stereotyping. “Savant syndrome is rare, even within the community of people with autism,” he said, “I think it’s a legitimate question, and we want to make sure that we don’t represent him as being representative in any way.”
At The San Francisco Chronicle, David Wiegand takes a skeptical look at a new Netflix comedy
Although Sam (a terrific Keir Gilchrist), the lead character in “Atypical,” is an 18-year-old on the autism spectrum, while JJ (equally terrific Micah Fowler) has cerebral palsy on “Speechless,” the two shows not only have similar plot foundations, but one is an example of how to do it right, and the other an example of how to screw it up. 
The comedies share the theme of the adjustments a family has to make when one of its members has special issues. In both of the above-mentioned shows, the sitcom mothers are fierce, domineering caregivers, while the fathers are somewhat more detached. Minnie Driver is a take-no-prisoners mom on “Speechless,” while Jennifer Jason Leigh as Elsa Gardner is her son’s ever-vigilant champion on “Atypical.” Elsa wears the “burden” of having a son with autism on her arm, day and night. She attends a support group, is overly protective of Sam and doesn’t want to face the reality that he’s eventually going to live his own life apart from the family. She wallows so completely in the challenges, real and perceived, of Sam’s autism that she uses them as an excuse for some personal bad behavior that feels completely inauthentic.

Sunday, August 6, 2017


In The Politics of Autism, I discuss the day-to-day challenges facing autistic peopleand their families.

Michael Vinci writes at The Philadelphia Public School Notebook:
Joselito "Josie" Torres is 19 years old, but until recently he had never made a purchase at a store by himself. He never rode the subway, nor had he bought a ticket to a museum on his own. But when Torres attended the University of Pennsylvania’s Graduate School of Education VAST LIFE program for teenagers with disabilities, that all changed.
VAST LIFE (which stands for Vocational Academic Social Skills Training Life Skills Independence Functional Experiences), is a program that pairs Penn graduate students with high school students ages 14-21 who have moderate to significant developmental and intellectual disabilities. The purpose of the program is to help graduate education students receive the experience they need to meet Pennsylvania requirements for special education certification, while also helping teenagers with disabilities in the tri-state area become more independent.

Monica Page-Torres, Josie’s mother, said that the VAST LIFE program has helped her son in many ways. 
“The program made him more independent. He was always very shy, but they taught him to communicate better by interacting with the other students. I’ve seen a change,” she said.

Saturday, August 5, 2017

Lawsuit: Problems in NYC Special Education

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act

From Disability Rights Advocates
M.G., et al. v. New York City Department of Education, et al.
Click here for case documents Date Filed: 07/27/2017 Status: Active 
On July 27, 2017, DRA filed a class action lawsuit against the New York City Department of Education (“DOE”), the City of New York, and DOE Chancellor Carmen Fariña, in her official capacity, alleging violations of the Individuals with Disabilities Education Act and other anti-discrimination laws on behalf of a class of students with disabilities who attend school in the Bronx and are being denied legally-mandated special education services. 
If the New York City Department of Education cannot find providers for related services that a student with a disability needs like occupational therapy or speech therapy, it issues a “voucher” to parents instead called Related Service Authorizations or RSAs 
While typically these services would be provided during the school day, the families of children receiving these vouchers are left to fend for themselves, often facing insurmountable obstacles related to limited transportation options, inflexible work schedules, and language barriers. These vouchers go unused at very high rates. In the Bronx, over 63% of the vouchers are not used. The rates of usage are not much better across the City generally as almost half of the over 9,000 vouchers issued in the 2015-2016 school year went unused
DRA’s goal in this case is to ensure that the DOE develops and implements a remedial plan that includes new practices, policies, and procedures to ensure that all students in the Plaintiff Class receive their related services.

Friday, August 4, 2017

Autism-Friendly Venues

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families

At The Philadelphia Inquirer, Rita Giordano reports that more recreational and cultural facilities are welcoming ASD kids and their families.
Philadelphia’s major league sports teams host autism awareness events. Delaware’s Dover International Speedway and NASCAR hold an autism-friendly weekend every year. Other kid meccas like the Please Touch Museum, the Garden State Discovery Museum, the Adventure Aquarium, the Philadelphia Zoo, and New Jersey’s Diggerland and Sahara Sam’s Oasis are among the places that offer programs and accommodations for ASD children 
When the Philadelphia-area Legoland, one of several around the country, opened this spring, facility officials promised autism-friendly programming. For its first event on July 28, Legoland partnered with the nearby Ruttenberg Autism Center to prepare, including training Legoland staff about the ways people with ASD may perceive things differently than they do. 
“It’s a different way of looking at the world through their eyes,” said Ruttenberg director Eric R. Mitchell, a psychologist who is also the parent of a teenager on the spectrum.

Thursday, August 3, 2017

Vaccine Reluctance Among Dog Owners Is Dangerous

In The Politics of Autism, I look at the discredited notion that vaccines cause autism

At Time, Jeffrey Kluger writes that vaccine reluctance among dog owners is not only stupid but dangerous.  In human populations, such attitudes lead to outbreaks of measlespertussis and other diseases.
The same is true of canine vaccines. And if you're inclined to think, well, that's a problem for the dogs to sort out, think again. Rabid dogs, for starters, are a threat to everyone. More worrisome, leptospirosis, a vaccine-preventable bacterial infection carried by rats, spreads readily to dogs and then to humans. A serious outbreak struck the New York-New Jersey area in 2017, and Brooklyn itself was hit in 2009. The disease is often fatal in dogs. In humans it can lead to liver failure, respiratory problems, meningitis and, in extreme cases, death.
"Outbreaks of disease among unvaccinated dogs can be devastating to a community," said Brian Hare, an associate professor of evolutionary anthropology at Duke University and founder of the Duke Canine Cognition Center. "Unvaccinated dogs going to daycares or dog parks, or even walking around their neighborhoods, are at a much higher risk of contracting, and spreading, these diseases ... If you love your dog and the people around you, vaccinate them."

Wednesday, August 2, 2017

Antivax Movement Goes to the Dogs

In The Politics of Autism, I look at the discredited notion that vaccines cause autism

Colin Mixson reports at Brooklyn Paper:
“We do see a higher number of clients who don’t want to vaccinate their animals,” said Dr. Amy Ford of the Veterinarian Wellness Center of Boerum Hill. “This may be stemming from the anti-vaccine movement, which people are now applying to their pets.”
The increased skepticism towards inoculating pets is likely the result of a national movement that claims vaccines can cause autism in children, according to the doctor, who said she has seen an increase in clients unwilling to have their dogs vaccinated in recent years. Core vaccines for canines include distemper, hepatitis, and rabies, which is required by law.
Hip youngsters who promote a more holistic lifestyle for their pets tend to be the most vocal anti-vaxxers, Ford said, but rarely have a particular reason for leaving Fido open to infection.
“It’s actually much more common in the hipster-y areas,” she said. “I really don’t know what the reasoning is, they just feel that injecting chemicals into their pet is going to cause problems.”
A Clinton Hill–based veterinarian, however, said she has heard clients suggest the inoculations could give their pups autism, echoing the argument of those who oppose vaccinating kids. But even if pooches were susceptible to the condition, their owners probably wouldn’t notice, according to the doctor.
“I had a client concerned about an autistic child who didn’t want to vaccinate the dog for the same reason,” said Dr. Stephanie Liff of Clinton Hill’s Pure Paws Veterinary Care. “We’ve never diagnosed autism in a dog. I don’t think you could.”

Tuesday, August 1, 2017

IACC Wants to Double Autism Research Funding

In The Politics of Autism, I discuss the sources of autism research funding -- including the Pentagon.

Michelle Diament reports at Disability Scoop:
The Interagency Autism Coordinating Committee, a government advisory panel comprised of federal officials and members of the autism community, voted last week to request that public and private dollars for autism research double.
The committee wants to see funding reach $685 million in 2020, roughly twice the $343 million spent in 2015. Under the plan, spending would rise 14.85 percent each year in order to meet the goal.
From IACC's draft strategic plan:
In 2008, the reported autism research funding for Federal agencies and private organizations was $222.2 million and 745 projects. In 2015, funding for ASD research among both Federal and private funders totaled $342.6 million and spanned 1,373 research projects. Over the eight years, autism research showed a general upward trend in funding, increasing by 35% since 2008. Looking over the last eight years, significant advances have been made in autism research in each of the question areas prioritized by the Committee. But, there are still some areas of research that lack the support needed to foster significant progress. Since the development of the last IACC Strategic Plan, we have reached milestones in our discoveries in autism research, but have also uncovered emerging areas in need of investments. This next edition of the IACC Strategic Plan builds on the priorities established in the previous Strategic Plans, identifies the gaps in research, and provides recommendations for future research and services endeavors so that we continue to make a difference in the lives of people with ASD and their families.

Sunday, July 30, 2017

ABA Provider Advocacy Group

The Politics of Autism includes a discussion of major interest groups such as Autism Speaks.

Lauren Rabin writes at The Huffington Post:
ABA is the only empirically validated method to address behaviors and deficits commonly associated with an autism diagnosis. However, it’s intensive and thus expensive which makes insurance coverage of the service extremely important. (A third important feature of ACA was the expansion of Medicaid funding, but we can leave that for another day).

While concern is understandable, there are organizations that are fighting to protect access to these services, including Autism Society of America and Autism Speaks. Another such organization is the National Coalition for Access to Autism Services (NCASS). NCASS is one of the only groups focused specifically on protecting access to autism services.

NCAAS was founded by prominent leaders in the autism community - consisting of organizations like Autism Business Association, Autism Spectrum Therapies, Center for Autism and Related Disorders and Butterfly Effects. These leaders realize that providers of autism services need a voice in order to protect access to quality autism services for all families in need. While NCAAS membership is primarily comprised of providers, its mission is to ensure access to the services needed by the autism community.

It was important for these leaders to join forces rather than advocate in Washington on their own.
“This is an extremely fragmented market made up of many small providers which makes it hard for our voices to be heard on a national level. Many of the leaders in the industry felt it was important to join together and protect the community we serve by ensuring access to evidence-based treatment,” said Justin Funches, a vice president at Autism Spectrum Therapies. Justin explained that together, there is a better chance we will be able to protect these critical services.

To learn more about NCAAS visit their website or to learn about one of their top leaders,Autism Spectrum Therapies, click here.
Another provider group is the Coalition of Autism Service Providers (CASP). 

Saturday, July 29, 2017

British Hacker

Cara McGoogan reports at The Telegraph:
'I won’t go to America,’ says Lauri Love. ‘But I might die – that’s my alternative.’ Long-term imprisonment in an American jail or suicide: such is the 32-year-old British hacker’s bleak assessment of his options as he contemplates his future from a Bayswater café.
Two years ago, officers from the Metropolitan Police Service appeared at the door of the Suffolk home where Love lives with his parents to arrest him on an extradition request from the US. His alleged crime? Hacking into dozens of government computer systems, including those of the FBI, US Army and Department of Defense, stealing ‘massive amounts’ of data and defacing official websites.

Last September, Westminster Magistrates’ Court granted the extradition request. If found guilty of the charges, Love faces up to 99 years in prison and $9 million (£7 million) in fines. He is appealing the decision in the High Court in November on the grounds that he has Asperger’s syndrome and severe depression, and would be a suicide risk in the care of a US penal system unable to deal with his conditions.
If Love’s plight sounds familiar, that’s perhaps because it has echoes of the case of Gary McKinnon, the British hacker who was arrested in 2002 for allegedly penetrating the defences of Nasa and Pentagon computers in pursuit of evidence of UFOs. He believed the US government was hiding extraterrestrial technology that might solve the world’s energy problems.
Three years later, McKinnon was charged by US authorities who applied for his extradition from the UK. The case dragged on for years, during which time McKinnon, like Love, was diagnosed with Asperger’s syndrome. By 2012, when Theresa May, then Home Secretary, ruled McKinnon would not, after all, be extradited, he was holed up in his house, researching suicide methods.
But their cases differ in one crucial respect. After ruling on McKinnon’s case, May introduced legislation that transferred the final decision-making power to the courts, making it difficult for the current Home Secretary, Amber Rudd, to intervene in Love’s case. All now rests on the High Court’s decision in November.

Thursday, July 27, 2017

Restraint and Seclusion: State and Local Policy

Douglas J. Gagnon, Marybeth J. Mattingly, and Vincent J. Connelly, have an article in The Journal of Disability Policy Studies titled "The Restraint and Seclusion of Students With a Disability: Examining Trends in U.S. School Districts and Their Policy Implications." The abstract:
Restraint and seclusion are possible aversive responses to problematic student behavior used in some public schools, most commonly on students with a disability. Considerable recent attention has been paid to these practices both in the media and in Congress, and subsequently roughly half of U.S. states have made changes to their laws or policy statements around restraint and seclusion since 2009. In this article, we illuminate trends in restraint and seclusion across the United States in recent years to better inform policy discussions on these matters. Specifically, we examined rates of reported restraint and seclusion across U.S. districts in the 2009–2010 and 2011–2012 school years. We found that general trends persist between the data collections: Most districts report no/little use of restraint or seclusion, with a small percentage of districts reporting exceedingly high rates. Furthermore, the vast majority of variation exists within rather than between states, which may suggest the importance of local factors such as district policy, school culture, and practitioner support in determining the frequency of restraint and seclusion in schools.